Caregiving: The Reality

“There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers. … Caregiving is hard, even on the good days when it brings joy and fulfillment. It requires dedication, determination, and time.” ~Rosalynn Carter

Last week a friend texted a group of us asking for any of us with experience with long-term care insurance to call. Because of my recent involvement with agencies while I searched for an assisted-living facility for my daughter, I responded. The system is not easy to navigate alone.

As the sole caregiver for her husband who is developing dementia along with other healthcare issues, her own well-being is in jeopardy. She needs help. She and her husband have been paying for long-term care insurance since 2003. She panicked when she learned how little they would reimburse her. “How is that helpful?” she agonized.

The following quote I read recently came to mind:

“The reality is that there is little to no social safety net for parents and caregivers in the USA. What is notably missing (from the Inflation Reduction Act of 2022) is investment in the social infrastructure of our nation that largely impacts women: childcare and eldercare.” ~Heather Cox Richardson

Joe Manchin and Chuck Schumer negotiated away proposals that could have made women’s lives easier as they compromised on the Build Back Better Act Biden wanted. Compromise was needed because Republicans are against any such parenting/caregiving aid.

It is clear, our leaders are willing to tolerate inequities when it comes to women’s lives. An internet search reveals details about the reality parents and caregivers face … the burden being placed primarily on women’s backs.

Tolerating Inequity in Parenting and Childcare

Women with children now spend an average 65 hours a week on unpaid chores – nearly a third more than fathers – according to the Boston Consulting Group, which questioned parents in five countries. (Reuters.com)

The deficiencies of the U.S. child care system have a disproportionate impact on one group in particular: women.

Paying for childcare represents more than 10% of the median income for a married couple, and more than 35% of the median income for a single parent. (childcareaware.org)

When Your Child is Disabled, the Workload Increases

According to the Census Bureau, … the monetary and nonmonetary costs associated with caring for children with disabilities can be substantial.

Inequities in Compensating Helpers

Childcare workers make between $18,000-47,000 a year, depending on the location.

Childcare Workers in Ohio make $27,624 per year on average, or $13 an hour.

Tolerating Unpaid Eldercare

Elders age 65 & older represent 16% of the US population (17.51% Ohio). That is projected to increase. Medium income in 2019 = $27,398 (Men = $36,921/Women = 21,815). 1 in 10 live below the poverty level…10.3% are women and 7.2% men. (Source)

The aging of the baby boom generation could fuel more than a 50 percent increase in the number of Americans ages 65 and older requiring nursing home care. Demand for elder care will also be driven by a steep rise in the number of Americans living with Alzheimer’s disease. (Source)

The National Alliance for Caregiving and AARP began studying unpaid caregiving for elders in 1997.

These are their detailed 2020 findings:

• The number of American’s providing unpaid care has increased over the last five years
• More are caring for more than one person
• More have difficulty coordinating care
• More are caring for someone with dementia or Alzheimer’s disease
• 23% say that caregiving has made their health worse
• 61% are women … 39% are men
• 45% have had at least one financial impact
• 61% work outside the home

Family caregivers now encompass more than one in five Americans. The study also reveals that family caregivers are in worse health compared to five years ago.

The CDC recognizes the health risk to informal and unpaid caregivers, naming it a public health priority.

Tolerating Inequity for Paid Caregivers (Source)

Home Care Aids (personal care, attendant care, non-medical care and companion care) = help with activities of daily living such as bathing, dressing, housekeeping and transportation … Nationwide in 2019, the average cost from home care agencies is $21.00 per hour with the state averages ranging from $16.00 – $28.00 per hour. (In my search for respite while caring for my daughter, I found local agencies charging between $25.50 and $32 with 2-4 hour minimum hours per visit).

Home Health Aides (nurse aides, nursing assistants, certified nursing assistants and geriatric aides) = provide higher level skilled nursing (checking pulses, temperature, respiration … assist with medications, braces, ventilators, other medical equipment + basic personal care … visiting as much as medically necessary; typically for shorter periods of time. In 2019, nationwide, the average hourly fee is $22.00. Different state averages range from $16.00 to $30.00 per hour. Because they receive greater federal regulation, they are almost always hired through an agency.

Private/Independent/Live-in Caregivers =regional economic factors greatly impact the hourly rate independent caregivers are paid. In a few isolated areas, caregivers make minimum wage. In most locations, independent caregivers are paid between $10 – $20 per hour, sometimes billing flat rates with fees 20-30% lower. However, they are typically uninsured, do not go through background checks, and may be unable to provide backups when they are unavailable.

Alzheimer’s Care = typically home care providers do not charge extra fees for this care. Senior living facilities, however, usually charge an additional $800-1200 per month.

Medicare & Medicare Supplemental Insurance = do not cover assistance for non-medical care provided in the home unless a person is homebound and home health care is considered medically necessary. Then brief, procedural visits may be partly covered. No personal care can be provided.

Few caregivers are able to afford the assistance they need.

Please share here any experience/recommendations you have regarding caregiving and/or resources you would recommend. Thank you.